Let it

Believe everything happens for a reason. If you get a chance, take it. If it changes your life, let it.”
Harvey MacKay

Monday, May 25, 2015

Things We Can't Control

**Warning: This post is pretty raw, and contains some graphic pictures and descriptions. If you get queasy at such things, proceed with caution. If your morbid curiosity just got all excited, by all means, have at it.

On Thursday, May 7th, I drove to Ogden, greeted my friend Rachel at her salon, and asked her to cut my 18 inches of hair off. The thought of handing my unconscious body off to doctors and nurses again was nauseating to me. I needed to feel in control of something.
Chop Chop

 I sat in her salon chair and we got to chatting about ridiculously personal things, (such as one does with a hairdresser, ) the giant elephant of the year came up- my health.  I had until Monday to decide what my surgery was going to be. I was still undecided. 
"Hysterectomy? BEST thing I've ever done... as long as they leave your ovaries."
This was the fourth time I had heard this from a friend with experience. Rachel's gorgeous mother chimed in and agreed from the chair in the corner behind me. Number 5. 
Heaven help me, I might actually do this.

As I drove home with the window down and the radio blasting, short hair ruffling in the wind, I didn't know if the haircut made me feel any more in control, but it sure was a nice distraction.

I was feeling pretty on edge for the weekend. I tried to remain calm. I'm pretty sure no one who offered me a hug knew that I wanted to dive into their arms and beg them to hold me together.
I attended one more yoga class on Friday. Bryan greeted me with compliments to my hair and a big hug. I squeezed him hard. Don't forget to let go.

I savored that class, knowing it would be my last for a while.

Monday morning brought my pre-op consultation. I was ready to take full advantage of this appointment. I fired question after question and was upfront about my indecision.
"I just want to give you as much information as possible, and let you decide." Dr. Fillerup was frank and thorough. In the end, with the facts as we knew them, I decided I didn't like the risk factors of bleeding out and decided to simplify things by choosing the laparoscopic hysterectomy. I had no idea that it wouldn't be my choice anyway.
I walked out of the office with extensive instructions for a day of strict liquid diet and laxatives followed by fasting on surgery day. Sounded like a real party.
Aaron decided he wasn't feeling well and he would work from home the rest of the day. It didn't take long for my inner composure to start unraveling. Aaron took one look at my face, and expressed his support of one last run. I changed my clothes, tied on my brand new Altra Superior 2.0s, told him I'd be in Mueller park, and got in the car. As I leaned into the steep road heading up 400 North, I thought I might puke. I was about to fly apart. And then I screamed. A ragged, raging, almost deafening scream. I was shocked at the anguish that came out of my body. Primal anger, fear, frustration, so much more that I didn't even realize had been brewing, pent up in my chest. I screamed again, this time from my toes and finished it off with a sob. It then I was done. That was it. No more.

When I pulled up at the trail head, I was already feeling better. Lock the car, stow the keys, start the watch, and walk. I had no expectations, but when it felt good to run, I ran, and when it didn't, I walked. There were very few people on the trail. The temps were perfect, sunshine and shade in beautiful harmony. I needed this. The longer the miles, the better it felt to run them. I gave myself credit for living a bold life, and for handling the cards I'd been dealt, until I was running with my head high, confident that I could handle whatever was coming my way. It's funny, whenever I get sort of a mental grasp on how strong and brave I am, I see everyone else in a new light. What are they going through that I have no clue about? What scars are they carrying? What major events made them who they are and brought them to where they are now? I like to think it makes me kinder- to them and to myself.
Mountain warrior

I finished the run feeling all revved up, like a warrior going to battle, at peace with what must be done. I was pleasantly surprised at how good 7 miles could feel after not running for over a month, and knowing I wouldn't run again for a while. I would miss it.

Liquid diets are not fun. Good friends took my kids to the homeschool opera performance so that I could stay home and deal with laxatives and all that jazz. By evening, when I cooked dinner for my family and sucked down my last smoothie, I was hangry. And then the fast began.
The next morning when I woke the kids to kiss them goodbye, I was not feeling like a warrior. We made it through check-in and paid another chunk of change to the hospital. We were SO close to meeting our out-of-pocket maximum for the year. Aaron held my hand and made me laugh through all of the preparations. One of our bishopric members, and anesthesiologist, had seen my name on the surgery list and dropped in to my pre-op room to wish us luck. I kissed Aaron goodbye and they wheeled me into the OR. There was less ado this time around. Dr. Fillerup and the nurses helped me get into position on the operating table and piled me all snuggled up in warm blankets, distracting me with being cared for as the jagged ache of anesthesia made it's way up my arm. Sleep.

I awoke to confusion and pain. They were getting me settled into my room.
"Things didn't go as expected."
I didn't understand.
Garbled tidbits of information made it through the anesthesia and morphine haze.
No hysterectomy.
They had to open you up.
Attached to the bowel.
Longer recovery.

I just really needed to pee.
"Doesn't she have a catheter? No?"
The nurses tried to help me up to go to the bathroom, but I didn't make it. Too much pain. Not alert enough. So they laid me back down and I closed my eyes, drifting at the edge of consciousness while one nurse coached a trainee on how to place a catheter. This was a nightmare. It had to be.
Ow. Ow. Ow. OW. Please, no! OW! OW!!!
They shushed and cooed at me like I was a baby until it was in place.
Please let me just disappear. I laid in my hospital bed with my eyes closed and cried.
My drug-fogged mind couldn't grasp what was happening, what had happened.
Aaron tried to explain it to me with tears in his eyes. His chin shook a little. He had had to make big decisions.
Dr. Fillerup had prepped me for hysterectomy and tried to find the lost IUD via laparoscopy as planned.  But it wasn't where we thought it was. It wasn't sticking out of the uterine wall as expected. The uterus was intact. After searching through my abdomen, she'd found the string, down low on the left side, the IUD was encapsulated in a large amount of scar tissue and absorbing into the wall of my colon.
Little string peeking out of the scar tissue

This was not good news. She had never seen this before. All simplicity went out the window. She had paused the surgery, consulted a general surgeon, and come out to the waiting room to show Aaron pictures and ask him what they should do. He was not prepared to make that decision.
"Can we wake her up and ask her?" They decided against it, knowing I'd probably be too groggy and confused to make a decision, and not wanting to put me through a second surgery.
He had called Alicia, panicked and desperate for advice. Alicia is a worrier. She panicked too.
In short order they decided I should keep my uterus, and the docs decided they would need to use the remaining surgery time window, cut open my abdomen, and cut the IUD and surrounding scar tissue from the bowel wall.
Cut it out!
The culprit- and a hefty chunk of my flesh

Then would come stitching and repair along with a generous dusting of powder to prevent adhesion between organs.
And so it was.

The look in Aaron's eyes begged to know if he'd made the right decision. I felt awful that he had been put in that position. He was second guessing himself even now. It was the decision I probably would have made. I told him I wasn't upset. I don't know if he believed me. In truth, I was upset, but not with him, not with the decision, with my own absolute sense of helplessness.
I pushed back the sense of physical violation I felt. I inspected my incisions- my soon-to-be scars.
Excuse me if I feel like a pin cushion.

This body I have worked so hard to honor. I felt like I had failed. Again.
I was in a limbo of pain, low oxygen levels, breathing alarms, IV alarms, catheter adjustments, heart rate monitors, vitals checks, blood tests, and trying to make the best of it all. Aaron was there. He made it all bearable.

Because of the nature of the surgery, I was placed on a clear liquid diet for another 24 hours. All I could think about was wanting a dang sandwich. Hangry.

I FaceTimed my parents in Hawaii. I called and texted family and friends. I wiled away the time with Netflix movies, Instagram and Facebook. Somewhere in the midst of it all, Jenna showed up in my hospital room. My Jenna.
The Famous Jay

She was the best thing ever. Having her there to talk to, laugh with, be ridiculous with, meant the world to me- even if it did hurt to laugh. I hadn't expected visitors. I'm too stinking independent. It was so very nice. Sleep that night was not restful. We were in the women's center with tiny newborns and new mamas who cried through the night. Vital checks came every couple of hours, and there was even a 4 am blood draw. Aaron was trying to sleep on the little fold-out cot thing from the sofa-chair. I felt awful for him. My abdomen was a bloated blob. All the pent up air from surgery had begun to make things hurt worse. It was a long night.
Aaron being my bed kitteh.

When morning came, I ordered my breakfast of juice, jello and broth and awaited the doctor's arrival. We'd be waiting all day.
A student from the DATC came by and gave me a pedicure. I could have kissed her.  When the doc finally came, there was only one important question. "Have you passed gas yet?" Despite burping every few seconds and finally being able to make it to the bathroom on my own, the answer was no. It meant my intestines hadn't woken up yet. Because of the unexpected nature of the surgery, it meant I couldn't go home.  It also meant I had to stay on a liquid diet.

I am fully convinced that hospitals exist in their own mid-plane twilight zone. We weren't prepared to stay for two nights. And after calling babysitters and rearranging meal plans, I got bored, antsy, and downright grumpy. The gnawing, empty sense of hunger didn't help, though I did have a small personal celebration when I finally was able to fart.
 Toward the second evening, Matt and Alicia made a very welcome visit. They always make for good conversation. Aaron was not looking forward to another restless night on the torture cot, but didn't want to leave me alone. Alicia offered to make a girls night of it so that Aaron could take the kids home to sleep in their own beds. Matt went to leave only to text Aaron for a jump start. Their car was acting up. By the time the cars got started and Alicia made it back with movies in tow, it was getting late. We settled in to giggle ourselves silly to Pitch Perfect until 12:30 am. I decided no one should have to endure the torture cot and sent her home to sleep. Aside from an early morning vitals check, I was left to sleep peacefully. I woke before 6 am and made it to the bathroom on my own, and ended up feeling good enough to take a solo walk through the quiet hallways. By 7:00 Dr. Fillerup made her rounds, declared me fit to go home, gave instructions to do basically nothing except gentle walking for the next 4-6 weeks (especially no lifting), and promised to write up the papers within the half hour. I texted Aaron to come break me out, a nurse disconnected my tubes and monitors and I headed for a quick shower. It felt so good to be free of all bandages, tubes and wires. I was feeling stronger and more confident, until I leaned back to rinse my shampoo and almost keeled over with the weight of my head because my abs still didn't work. Awesome. Somehow I survived washing and dressing. I puttered about packing and tidying, all the while being careful not to lift anything that required core muscles or twisting (which includes, surprisingly, pretty much everything). Then Aaron was there, and I was free.

Home presented it's own challenges. First order of business, build a step out of yoga blocks so I could get in and out of bed. New learning curve as to how to move to get around without too much pain. Second order of business, REAL FOOD. Aaron made a special trip to the Sunshine Cafe to get my favorite Garden Classic. I laid into that thing like it owed me money. So dang good.

We have had wonderful friends and neighbors bring us meals. Family and friends have taken kids so that I could have a break from noise and being whined at.  A few awesome people have dropped in to visit or sent treats. These things mean so much to us, and help immensely.
It's hard to grasp that it's been almost 2 weeks now. On the other hand it feels like it's been FOREVER since I've done anything worthwhile. The staples are out, the adhesive has worn off, the scars will heal pretty well. But I'm in the midst of the mind game. One can only binge-watch Hulu for so long before one wants to smack one's head into a wall. I have gotten pretty good at taking non-skanky bed selfies...
This one says, moody and forlorn
Straight up bored
I've been making my way through a stack of good books. It's slow going because pain does things to my attention span. Little things that we all take for granted are serious challenges. Rolling over in bed is a delicate crap shoot, a coughing fit can leave me in tears, sneezing feels like a red-hot knife to the ab muscles, and bowel movements leave me horribly breathless.
Everyday I go on my walk down the street. Everyday I make it a little further before needing to turn back. Uneven ground is rough... and I live on a hill.
Every day things get a little better.
Every day I remind myself that this too shall pass.
Every day I wake up with the question in my mind, "Can I give up yet?"
And everyday I answer myself, "Sure. Give up expecting things to be peachy. Give up deciding to feel terribly depressed when they aren't. Give up wanting more now, and decide to be content with where you are." Then I hate myself for being so clever and logical, and make faces and flip myself off in the mirror or something.

It's a slippery slope though... giving up. It can easy lead to "Give up dreaming. Give up hope. Give up on the idea that you can have any control over anything in your life." But those ones start to make me feel a little bit dead inside, so I try not to go there.
I miss the feeling that if I work hard and love hard and keep smiling, I can have dreams and accomplish them. There is nothing quite like watching the slow death of your own optimism.

I miss the camaraderie of my tribes. I miss endorphins. I miss my mountains and my yoga mat. I miss stretching and movement.
There is a deep, and continuous battle between gratitude and cynical depression. A constant discord between what I know and what I feel.
I'm blessed. I'm loved. I'm cared for.
I know that I have friends that would do anything I asked of them, but I don't even know what to ask for. I'm almost embarrassed to be around the people who have come to expect more of me than what this numb, confused, small person can offer. When it comes down to it, I'm just rather sad, tired and lonely, and I don't know how to fix it except to just wait it out.
It will get better. It has to.

Sunday, May 3, 2015

When it all falls apart...again.

On March 27th, just as I was about to breathe a sigh of relief for having made it through all the March birthdays in our family and trying to deal with car repairs and a dead washing machine, I couldn't breathe.

I was prepping for the final birthday party of the month, a little park and popsicle party for Arya and her cousin Wyatt. I got up, feeling well. Did some squats and pushups and hopped in the shower. Then just as I was beginning to dress, I got a phone call from my favorite Alicia. We had been chatting for a while, checking in, when I began having left side cramps. They aren't new, I've had abdominal pain on and off for years. I suspected they were either ovarian cysts or some kind of intestinal issues. But they didn't fade this time. They intensified and wrapped around my back until I was panting out short replies to Alicia, curled up in a ball on the bed in my underwear. "I think I need to go. (gasp, cringe, pant, pant) I don't feel okay." I wheezed into the phone. I tried to walk to the bathroom and ended up on the floor. I finally made it to the toilet, only to dry heave, then lay on the floor gasping between bouts of retching uncontrollably again and again with no relief. I texted Aaron. "I think I need a doctor."
Those are big words coming from me. Every breath was a struggle.
I made some calls and got in for a noon appointment with a PA at our local family practice. The next challenge was to put on clothes. Pants have never been such a challenge. Aaron rushed home to take me in. We left Talon in charge and made the short trip. Every bump was excruciating. I had to hold the seatbelt away from my belly. We made it to the doc's office just as I remembered I'd forgotten my purse. No ID to go with my insurance card. They were gracious. I filled out papers as I broke into a sweat trying not to pass out. Eventually we made it back to an exam room where I answered questions from nurses and met Wendy who took one look and asked if I was sure I didn't want to go to the ER.
I briefly explained to her how badly I hate the ER and how it took me an entire night with no painkillers and a shattered ankle to get there the last time. She dubiously nodded her head and asked if I thought I could pee in a cup. I responded I thought maybe so, and remembered that I hadn't had anything to eat or drink since the night before. I've never peed straight coca-cola before, but I imagine it would have been a fair color comparison. "That can't be good," I muttered to the toilet.
Wendy agreed. "I suspect kidney stones. I'm sending you up to the hospital for a CT and some blood work. Start drinking water -lots of it." Awesome. (No, not awesome.)
I felt like an evil giant had a vice grip on my entire left side.
We headed home to get my purse and a water bottle, and then back up to the hospital where nice people took my insurance info and put me in a wheelchair. CT scans are quick and easy. They are a crap-ton of radiation, but they are easy! They wheeled me to the lab and took my blood and sent me on my way with a cheery,"We'll call you!"

So we went home. I took Ibuprofen, called Alicia, and laid on the couch while Aaron and Alicia took the kids and threw a birthday party without me.
And the phone rang.
"Hey Kristyan, this is Wendy. So there is a 6mm kidney stone, but your scan showed more than that."
"There are a couple of suspicious looking masses on your liver. So we want you to go in for a contrast MRI to check those out and see if they pose a risk."
That sounds crappy... and expensive....
"You said you weren't on any birth control, right?"
"Well there is an IUD outside of your uterus."
Oh.... that's where that went. It went missing like six and a half years ago. I've had a baby since then and they couldn't find it with ultrasound, so they told me it just fell out.
"Apparently it didn't.  You'll need laparoscopic surgery to remove it... blahblahblahblahwhompwhompwhomp."
*Cringe* $$$$$$$
She prescribed me some medicine to dilate my ureters to help pass the stone... And antibiotics... and percocet. With flashbacks of awful digestive torment spinning in my head, I decided I probably wouldn't take that. Matt and Alicia brought lettuce wrapped In-n-Out for dinner, and Misha and Ben took the kids for the evening so I could rest. I have the best family.
Thus began a weekend of drowning myself, being incredibly dizzy and lightheaded from FloMax side effects, gagging down lemon and oil concoctions designed to help dissolve kidney stones, and cleaning up puke for sick kids... with no washing machine. Angel neighbors took loads of puke laundry to wash, and brought meals so I wouldn't have to cook.
Monday rolled around. An appointment with the Urology PA. X-rays showed that the stone was still there, and big, and pointy, and very stuck. "Oh, and by the way, did you know about the IUD and the liver thing....?" Yes. I did. Thanks.
They scheduled me for Lithotripsy on Thursday. Shockwave therapy to break up the stone. They put you under and call it surgery and you wake up bruised and peeing blood. Sounds like a party.
It was my last week of work on the schedule, and no one could cover my shifts (though Brett was sweet enough to take a few of the hours), so I went to work. Dizzy, coughing, wheezing (stupid med side effects).
Tuesday was MRI day. Hospitals are such an efficient money making machine. They take you straight back to the billing people and offer you discounts to hand over money right this instant. So after coughing up a couple grand, we headed back to radiology. MRIs are not quick and easy. They are terrifying.
Strapped to a board, breathing sensor around my chest, needle in arm, earplugs in (but not in well enough), and panic button in hand, I was slid into a tube only slightly wider than my body, and blasted with every laser gun, tornado warning, robot sound effect cranked up loud enough to waken the dead.... for an hour.  I honestly wondered for a second if it was a joke. They couldn't be serious.
The first 5-10 minutes were torture, pure panic, claustrophobic primal fear. "I don't know if I can do this!!"
So I prayed. I began slipping yogic meditation in between the automated breathing instructions. I vividly imagined every person I've ever loved hugging me close, and then stayed in Aaron's arms until the panic subsided. When I opened my eyes, the tunnel walls didn't seem quite so close, and the noises seemed funny to me. I spent the rest of the time alternating management of giggles and panic.
Then the technician's voice came on speaker, "You are doing awesome! Here comes the contrast through your IV." The frigid fluid coursed into my arm and flooded my body. It felt like it was dripping down my arm. A few more minutes of shivery torture, and then I was done.
They pulled me out of the machine. "Well, that was a party," I quipped. They laughed and unstrapped me, and then noticed the bloody saline leaking from my IV and dripping onto my sweater. Oops.
I gathered my things and went to find Aaron in the waiting room. His face was a most welcome sight.
Then they sent us on our way with a cheery, "We'll call you!"

The next 2 days were spent jumping at every noise, waiting for that call. I worked my last day on Wednesday, dizzy, coughing, and nauseated from the meds- still jumping at every noise.
"You're leaving us now, with no way to know if you are dying or not??" I promised Jeremy that I'd get them word. I hugged Danny and Angie. My buddies. I would miss them most.

Thursday was Lithotripsy day. They could get me in at 11:30. I had fasted since 10 the night before. We arrive at the hospital again, shuffled into the billing room and fulfilled the rest of our deductible (probably more), efficiently draining my hard-kept savings account. Then they took me back and I dressed in the paper bag gown with the awesome massaging calf compression sleeves and waited. And waited. And waited. I was getting grumpy. 2 and a half hours later, they took me back to the OR. They got me situated and put on the oxygen mask. "It might smell a little plasticky," they said. But when my eyes started to burn and I began gagging and choking uncontrollably at the stench, they realized that the "dirty sock" scent that they use to tease pediatric patients was cranked all the way up to 20. I had tears streaming down my face by the time I could breathe comfortably again. Then they started the anesthesia and a searing pain spread up my arm. I figured I'd be out before I couldn't manage it, but 10 seconds in my entire arm was on fire, enough that I cried out in pain. "It's normal, just a few more seconds," they said. And then I was out.

I like waking up to Aaron. He's pretty awesome. I was sore, but not even close to the original kidney stone pain. They sent me home with a pee strainer and instructions to collect the pieces and bring them in for testing. I didn't care, I just wanted food.
We stopped by Jimmy Johns on the way home. While Aaron went in to get us unwiches, I checked my messages. There was one from my cousin. We're close in age, but had not been super close growing up. We get along much better as adults. It was completely unexpected. She had bought me a new washing machine and wanted my address for delivery. I was floored, flabbergasted, and so grateful. My life is filled with angels.
And then came the other call I'd been waiting for. MRI results. There were not two lesions on my liver... there were seven. The largest measured 2.6 cm. My heart skipped a beat... They were benign. No cancer. No action needed except to watch and re-scan in 6 months. Hepatic Hemangioma. Apparently they can either be congenital or autoimmune-caused. We don't know if I was born with them. We don't know if something caused them, but for now, they aren't a major worry. *Phew.*

Lithotripsy recovery went well. The FloMax had me feeling awful until I finally just stopped taking it. I was done feeling like a sick person all of the time.
At first I was incensed that the OBGYN couldn't even see me for a consult until April 13th. But it turned out to be a good thing. Aaron's little brother had a wedding, and it was nice to have a break from all of the medical procedures in order to focus on family time. When I did finally make it in to see Dr. Fillerup, I was told that the IUD is still about 5% stuck in outer wall of my uterus. There is an 80% chance that they'll just go in and take it out and things will be fine. There is a 20% chance that pulling it out will cause major bleeding and they'll have to perform a partial hysterectomy while I'm under. I'm a little nervous. I was given a choice of two dates for my surgery. April 22nd, or May 13th. Aaron's B-Day is April 23rd. He'd had a Zion traverse trip planned for that week. I couldn't just steamroll him like that. He matters too much. So May 13th it is.

I'm tired of waiting. I'm tired of tests, labs, meds, side effects, and follow-up visits. I'm just tired. I want this thing out of me.
In the meantime life has kept me good and distracted with car repairs, family stuff, and hospital bills. Somehow, by the grace of God, we had an incredible week-long family trip to Zion in our dying van. (I'll write about the trip later- it deserves it's own post.)

I finally started going back to regular Yoga classes. I have so much healing to do. It dawned on me the other day that I've lost my sense of security. I've lost my belief that I can safely live, safely adventure, reach out, take a leap, and not get smacked down by life. At this point, I honestly don't believe I'm allowed to have dreams or goals that will ever come to fruition. I've been in survival mode for so long, I don't know how to try for more than that. I can't make a decision. I can't set a goal. I can't seem to even make short term plans for the subconscious fear that they will be smashed to bits the moment I look that direction. I've gotten really good at shrugging my shoulders and saying, "I guess not. Maybe later." Somewhere deep down there is a fighter in me that knows this is unacceptable. So I guess somehow I need to earn my power back. I don't know how to do it. I'm starting with yoga, energy work, writing, and I don't know... yard work? Home repairs? A hair cut? I just really need to get out of this rut.

When it comes down to it, I'm okay. I may not be awesome right now, but I have just enough faith to get by. Faith that none of this is permanent. Faith that change will come. Faith that even though I can't see the big picture right now, it's still a great big picture. And I have the best family and friends that a girl could ever want. So I guess I'll just take it a day at a time and..... be grateful.